Some who read my blog may find this post upsetting and I understand. I’m going to be walking on holy ground for many of us who live with dissociative identity disorder.
I have lived dissociative identity disorder all my life, but now a new diagnosis has been added to explain my physical discomfort. Somatic symptom disorder (SSD) formerly known as somatization disorder).
The latter disorder is the one this article is about.
I want to ask one huge favor of all my readers. I’m going to be speaking on a very touchy subject for some of us. Talking about the pain that we feel but that has no basis in physical facts is a holy-shit topic for many. I know, I have felt this way many times.
Let me make it perfectly clear that I am absolutely not saying here that any of you or I are faking. Nope. I’m not. Just read the article through before you judge me too harshly. I’m writing from experience as one of you, not some doctor trying to say you are a nut case.
So, hang onto your hats everyone, the ride might get pretty bumpy.
My Recent Health Scare
As many of my readers know, I’ve been having some physical problems lately. I have had massive headaches, dizziness, blurry vision and a lot of other neurological symptoms. I grew frightened because I had triple negative breast cancer in 2014 and had my right breast completely removed.
I went to my doctor. She brushed me off saying I needed physical therapy. I felt frustrated with her for not listening to me and changed doctors.
This doctor listened and decided to be safe we would do an MRI with contrast to have a look.
I saw him again on Friday to get the results.
My brain looks fairly normal. They did find signs of the small strokes (transient ischemic attacks) I’ve had. They also found a few regions in my brain were undersized.
Since I have DID, that wasn’t surprising to me at all.
What they didn’t find was any reason for my symptoms. I was very frustrated and upset because I have been and still do feel like shit.
“What is going on?” I begged him.
His answer, “Would you like to increase your antidepressant?”
What I Heard Verses What He Said
To say I was dismayed plays down the strong emotions that flooded me. Like all of you, I spent my entire childhood having people refusing to listen to me. Even when I was seven, the doctors didn’t listen to me after I tried to leap from a ledge more than thirty floors above a busy Memphis highway.
During the fifteen years, I was being brutally abused, I tried in many ways to get help without saying the words, but my teachers, doctors, Sunday school teachers, and other adults wouldn’t listen.
When I grew into a young adult, I had all kinds of nasty neurological symptoms. Basically, they were very much the same as those I’ve been having lately. There again I went to doctors to find out what the hell was wrong with me. I was ignored for the most part, until I went to a neurological clinic in St. Louis, Missouri.
The doctor who saw me in the St. Louis Neurological Clinic told me I needed desperately to lose weight, lower my stress level and get off the midnight shift I had been working for almost three years.
When Reality Bites You in the Ass
I felt insulted. There WAS something wrong with me, I just knew it. However, I took his advice. I got off the midnight shift for evenings, lost a lot of weight and moved out on my own away from my family of origin who was dedicated to living a life in crisis.
Does this scenario sound familiar from the first few paragraphs?
After I had forced myself to calm down inside, I thought about what my new doctor had said and pondered.
The symptoms I have been having in the past year that have been getting gradually worse almost exactly mirror those I had in the 1980s.
It’s from this point on that this article can set people off. I want you all to remember, I AM NOT talking about you, I AM talking about ME.
The greatest reason I have been feeling so badly this past year is that I do not take care of myself. My body is rebelling from a form of self-induced abuse.
I have gained 50 pounds in this past year, I eat too much artificial sweetener and I do not exercise at all. I sit in my recliner and do nothing but exercise my fingers when I type. That’s it.
If you think that you can’t eat too much sweetener, think again. I used Aspartame for years until I began to have some serious mental health issues unrelated to the DID diagnosis. Now I’ve been using generic Splenda and am beginning to have some of the same things happening.
You see, I don’t just put one or two sweeteners in a cup of coffee, I must have more than four or I’m not satisfied. That means, on an average day I might consume more than twenty of the packets!
Way, way too much!
Setting Priorities and Getting My Act Together
Losing weight is a priority. I now weight almost 300 lbs. again, something I swore I would never do again.
While I was listening to the doctor Friday, he told me about a phone app that would help me keep track of my calories and other nutrients. Instead of feeling defensive and angry like I have I times past, I really listened and decided to take him up on his idea.
Not only am I now keeping close track of what goes down my gullet, but I’m also cutting way back on sweetener. I will not completely stop using it because I cannot consume sugar, however, I will no longer use more than ten a day. If I still don’t feel right, I’ll cut it back more.
I am not going to starve myself, that is counterproductive. I’m going to feed my body nutritious food and keep calories for later in the day when I usually watch YouTube and want to snack.
It’s time I stop living to eat and begin eating to live.
In other words, I’m getting my act together.
My Questions I Asked Myself and the Answers I Came to Understand
As I have examined my “illness”, I realized there was more going on here than met the eye. It wasn’t just my diet and lack of exercise that was making me have the symptoms that have both frightened me and slowed me down. There is another problem lurking in the dark that is harming me, somatic symptom disorder.
When the doctor first announced to me that they could find nothing wrong, I wanted to weep. I would have had I not been in the presence of a stranger. I found myself asking familiar questions in my mind.
With the help of my therapist later that same morning after my doctor’s appointment, I have settled for the following answers to those questions.
Am I just looking for attention?
No, my therapist assured me. Why would I look for attention by “pretending” to be sick? I have taken control of my life as much as anyone can with dissociative identity disorder and I am very involved with advocacy. I have no reason to look for attention from doctors when I have a growing career.
Are my symptoms in my mind?
Yes, and no.
Somatic Symptom Disorder (SSD)
While discussing my problem with my therapist that morning, I was reminded of something I had read about but paid little attention to. Perhaps I should have looked at it better because it turns out I not totally responsible for my symptoms as they are directly related to my childhood.
I am living with a coexisting condition known as somatic symptom disorder (SSD). A simple explanation of what constitutes this disorder is as follows:
Somatic symptom disorder is a form of mental illness that causes one or more bodily symptoms, including pain. The symptoms can involve one or more different organs and body systems, such as:
- Gastrointestinal symptoms: abdominal pain, nausea
- Pain: joint pain, pain in the extremities
- Cardiopulmonary symptoms: shortness of breath, chest pain, dizziness
- Conversion symptoms: difficulty swallowing and walking
- Neurological Symptoms: migraines, blurry vision
- Reproductive Symptoms: irregular and painful menstruation
Before we go on, it is vital to remind everyone that these aches, pains and other symptoms are not fake. They are very real and are disruptive to life.
In a paper published in 1994 by Glenn N. Saxe and company in the American Journal of Psychiatry reported a study to see the correlation between people living with DID (then called multiple personality disorder) and what was then called somatization disorder.
They concluded the following after studying people who live with DID against those who do not.
“Somatization disorder (somatic symptom disorder) is a frequent and serious comorbid disorder among patients with dissociative disorders.”
In fact, in their study, 80% of the patients with dissociative disorders reported headaches, a finding that was consistent with other studies examining the same or similar issues.
What Causes Somatic Symptom Disorder
There is a lot of speculation for the causes of somatic symptom disorder. However, in a paper I found published by the American Journal of Psychiatry by Dr. Richard J. Brown and associates in 2005 can help shed some light.
They found that somatization disorder (now called somatic symptom disorder) was heavily present in patients who reported severe emotional and physical abuse. They also found that sexual abuse, separation/loss and witnessing violence, anything their subjects went through as children that conflicted with their need for a cohesive family were huge factors in forming SDD.
To quote the paper, “Somatization disorder patients reported significantly greater childhood emotional abuse and more severe forms of physical abuse, relative to the comparison subjects, with chronic emotional abuse being the best predictor of unexplained symptoms.”
It is totally no surprise that adults who experienced violations against their bodies and minds as children would grow up to have difficulty understanding the sensations we feel and misread the signals.
We swing from one extreme to another. We worry too much about that ache we have in the back of our head, or we totally ignore it. Either way, such a misunderstanding of our bodies wreaks havoc on our lives.
What Shall We Do to Heal?
Somatic symptom disorder, as I have said, is not a case of malingering or pretending to have pain. The pain is real and needs to be addressed by your healthcare practitioner. They must rule out, as did my MRI, that there is nothing physically wrong causing your discomfort.
That is number one.
Then, if the tests come back normal, it’s time to listen without judgment to what your provider has to say. They may not understand fully what they are seeing, but a good Therapist or Psychiatrist would.
The first thing you be thinking is, “Isn’t there a quick fix, like a magic pill that will fix me?”
Let me state this for the record:
There are no magic pills.
There never was nor is there likely to be in the future.
However, antidepressant medications are often prescribed, but they only address the underlying emotional issues and even they take a while to help.
I looked on the Mayo Clinic website to see what they recommended. Although these ideas are not specifically for people who live with DID or other effects from childhood trauma, they make pretty good sense.
The first thing they state is that the goal of treatment is to improve your symptoms and your ability to function.
The next recommendation the Mayo Clinic site gives is to seek out psychotherapy. I know, I know, many of us are already in psychotherapy for our childhood trauma issues, so mentioning this may seem redundant. However, you and I both know how horribly stressful working on these issues is for us. The anxiety, depression, and just plain fear that accompany working on the issues we must face are daunting.
- The type of psychotherapy mentioned on the Mayo Clinic site is cognitive behavioral therapy (CBT).
The reasons CBT can help are:
- It will help you examine and adapt your beliefs about the physical sensations in your body
- Help you learn ways to reduce stress
- Help you learn to cope when physical symptoms occur
- Help reduce your preoccupation with your symptoms
- Help eliminate your avoidance of situations and activities because they are uncomfortable
- Aid in addressing the mental health disorder that you have developed due to your childhood adverse experiences
How Does It Help Me to Recognize My Somatic Disorder?
Now that I know that, other than being in a wheelchair and being very obese, I am basically very healthy. Now I can concentrate on losing the weight and being more active.
However, for me, it is more than that.
I am beginning to concentrate more on where I can go from here. I have gotten the spunk back I had lost and am ready to push forward once more.
Just like with the other issues surrounding the childhood trauma I endured as a kid, I’m ready to conquer this issue too. It will not win. I will succeed.
I am not imagining the aches and pains I feel. They are real. However, now I understand I do not need to panic because I am okay. I know the steps I need to make myself feel better and can move on.
I saw the following quote and loved it. It seems so apt to put at the end of this article.
“Far better is it to dare mighty things, to win glorious triumphs, even though checkered by failure than to rank with those poor spirits who neither enjoy much nor suffer much, because they live in a gray twilight that knows not victory nor defeat.” Theodore Roosevelt
It is the suffering we have endured that makes multiples special, not the disorder itself. Please, try to remember that.